Incomplete autism (?)

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Sometimes I feel like I’m not exactly a “completely” autistic person, in a way.

What does that mean?

Well, it’s kind of hard to pin down, but I’ll do my best.

I can say with certainty that it’s not like I feel like a fraud. I know that I’m on the Asperger’s/autism spectrum. I knew it before I went for my formal evaluation. I knew it when I looked up the characteristics. I knew it when I read the incredible blog posts of other people on the Asperger’s/autism spectrum. I knew it when I started blogging. I knew it when I joined social media. And finally, it was corroborated by my formal diagnosis.

So, I know that I’m for real. Oh, there have been a tiny (single-handed) few people who were pretty much out of touch with reality, who tried to accuse me of being a fraud, or somehow less-than-real.

But I am real. And I step deeper into my new shoes each day, feeling the proverbial sand welcome my feet into its fold, knowing that I am comfortable and welcome here.

And I walk my path each day, obediently (and willingly, even happily) fulfilling my journey, putting one foot in front of the other, stringing words together (both those read and written), and I increasingly reveal to the world my authentic self.

It’s a flappy, happy vibe.

The newness, however, is still there. I’ve written before about how coming into my own and getting used to my new Asperger’s/autistic identity is a process. Although I discovered it one night, it didn’t happen overnight. It’s still crashing into me, washing over me in refreshing, cleansing, clarifying, peace-making ways.

And every time a new wave hits me, I don’t necessarily have the “good” sense to shut my mouth about it. After all, I still feel compelled to (over?)share.

It’s not that I still feel the need to convince myself. I’m already convinced. It’s just that each new crashing wave brings the idea further on home, and makes it even more real for me.

In the movie “The Matrix”, Morpheus expresses concern about liberating Neo from his artificial intelligence-created tomb, lamenting that it’s not wise to free someone so late in life. He was almost too old to be set free. This is because in their experience, anyone liberated after a certain age has a tougher time accepting the truth; they’ve lived in the illusion-world for so long, and they’ve carved out their place in it.

Well, I can vehemently say that I never carved out any place in the neurotypical world at large. The realization that I’m autistic/an Aspie was not a tough pill to swallow. That, I am solid about.

But although the discovery wasn’t hard to take (it was, in itself, a liberation, and I know that my life is miraculously better off for it), I can still identify with Neo from “The Matrix” in a way.

I wasn’t diagnosed as a kid. I was much older when I found out the truth about my place on the Asperger’s/autism spectrum.

So I never had to endure horrendous “therapies” like ABA, ECT, etc. I can read the personal accounts of others who have, and I can imagine what it must have been like (blech!). But I can’t identify firsthand.

I didn’t have any specialized education. There were no individualized education plans (IEPs) in my academic experience. My education was the same as any non-autistic person. I never had an OT (occupational therapist).

So, I didn’t have the “full” (conventionally-speaking) experience of being a (known/diagnosed) autistic kid, and I also didn’t have the more common experiences often shared among other autistic adults, either.

Many adult-diagnosed autistic people describe how their partner began asking them questions or encouraged them to look into the idea that they may be autistic. Or maybe people at work started to suggest or hint at the possibility that they might be on the spectrum.

My partner isn’t very in-tune with me in that way, nor did he know enough about the topic to address it with me. And I’ve been self-employed since long before my “masking/acting” abilities started to tank. So I didn’t have anyone in my life nudging me to explore the possibility that I may be autistic.

I don’t have any kids, much less any on the spectrum. So, I never had any mental health or medical professionals gaze upon me with any suspicion like they sometimes do with parents who bring their children in for an autism spectrum evaluation. I also never looked at the questionnaires that listed and described the various traits and had any “wow, this sounds like me, too!” a-ha moments.

In fact, had I not been doing what I do, sifting through the medical journals, paying attention to the titles of the various published papers and thinking back to a distant family member I had only met less than three years before (a total of two times, no less), and having the presence of mind to start connecting dots in my head with an open mind…

…then I might never have made the discovery (!).

I was browsing research journals online, y’all. Seriously, that’s how I found out. I had been browsing them for two years already. All kinds of topics–gastrointestinal issues, hormone imbalances, nutrition, schizophrenia, PTSD (which I also hadn’t known that I had until 2015), microbiology, toxicology, genetics, psychology, sociology, herbal extracts, the after-effects of surgery and general anesthesia, and so on and on and on…

I make for a pretty boring autistic.

There’s so very much of the Asperger’s/autistic experience that I can relate to.

And there’s also a little bit that I don’t share firsthand.

I never had the experiences that so many others have. I never had the eating disorders, the preoccupation with dinosaurs, the fascination with trains (although I love trains), the self-harm, the aptitude for computers or writing code or tinkering with machines or flapping my hands or rocking back and forth.

Dang, I am a pretty boring autistic person! (Smile.)

I have more in common with the autistic community than I ever realized, though. It’s amazing how many “me too”s fly back and forth on a daily basis.

Those common threads are treasured, of course.

Maybe my differences (and those of others in a similar position, or even in different positions) add something to the spectrum, some kind of additional depth and color. Maybe our differences turn the spectrum into more of a 3D cloud or a constellation.

Maybe it’s not “incomplete” autism, per se, that I’m feeling. Maybe more of an “unconventional” autism. 🙂

Published by Laina Eartharcher

56 Comments

I think adding the word “spectrum” was the best thing to happen to the autism diagnosis. Just as no two NT people are alike, no two autistic people are alike. You, and others diagnosed as adults, may not share the experiences of people diagnosed as children, but that doesn’t change the way your brain functions. You have your own, unique place in/on the spectrum, and from that place you shine✨💖⭐❤💫💓🌟💞

^^ This! 😊😊. There are a couple of issues that I see with the spectrum term (which I’ve been thinking about writing about for a while), but they’re pretty minor in the grand scheme 😉. In general, it’s a totally beautiful idea! And your expansion on this is perfect; I agree wholeheartedly 👏🏼👏🏼❤️😘💜

I write more on your blog than my own😕 I’m a serial replier 😂 It’s like my brain need a “jump” to get into gear. Your posts always “jump” my thoughts but when I try to do a post of my own I feel stuck in idle. Yes, my brain is a car. A rusty, flat tired, cracked windshield, out of gas car😂😂🚘🌻🌴😎

I frequently feel like a fraud, because I’m not “doing it right” when it comes to being a person with autism. I don’t do ALL of the things that fit the common perception of How Autistic People Behave and Think. I actually have reasonably good skill with words (people pay me money to make THEIR words make more sense, so I must be doing okay), and I didn’t even acquire my “splinter skill” with written language through rote memorization (I’m TERRIBLE at rote memorization). My interest in dinosaurs was short-lived and hit me when I was five years old, which is probably quite normal for NT kids, too. (My twin, though, studied paleontology as an undergrad and has found dinosaur bones on digs.) I don’t think I have any particular aptitude for computers. I never had any eating disorders, unless you count legitimate food allergies that were proven to BE food allergies through a series of tests.

On the other hand, I wish I’d known a long time ago that I’m autistic, and I wish I’d known that certain behaviors that are, according to conventional wisdom (that endless font of total nonsense), found only in depressed and attention-seeking teenage girls, are actually not unheard-of in autistic individuals. Not all of my scars are from surgeries. (I, too, have that tendency toward “oversharing” sometimes, but I’ve always known that about myself.)

I still feel incomplete, mainly because of lack of confirmation (still not sent the email). I didn’t think he was right when Aspie husband said I was like him, because i didn’t fit the perceived image of an Aspie or like him (techy geek genius). I do have an eating disorder though (SED), believe me if you don’t, you lucked out. I can honestly say it has made my life more difficult than anything else, and I cant do a thing to change it. Like the ASD its hardwired into my head. If there was any part of my brain I could cut out and throw away it would be that, not the Aspieness.

Oh my dear, I feel you girl 💐💐. I can only imagine how difficult that must be. I’m so glad your Aspie husband is astute 😊. You’ll get the confirmation when it’s time; I have no doubt that it should be easy for an enlightened professional to see (meant with only love and encouragement, of course) 💙💜💞

The food thing is so restrictive, means much of socialising is a no-go, travel outside of the country certainly is impossible, even within is difficult. I hate it, its humiliating and people rarely understand. I spent the first 35 odd years believing as I was told, that I was childish, silly, being awkward, being deliberately difficult. I spent most of my life avoiding and lying to get out of situations to hide it. Its only when I found it had a name, an that others were the same as me that I was able to begin to talk about it at all. Its the knowing there’s a legitimate reason for it thats liberating, and helps the acceptance. Same with the Aspiness.

I had you pegged for ‘real’ just by the way you blog. It’s like you can’t explain hard enough, so you use, as one person pointed out to me years ago when I first started, 10,000 words to get an idea across. Your excessive tenacity just to express yourself screams autism to me. Every autie I’ve run into, whatever form of expression they use (writing is one of many arts), it’s excessive. I say this with love and lolz. ❤

I know what you mean. I’m still flip-flopping between convinced and doubtful. One of the obstacles for me is that my childhood was “too happy”. Nobody ever spotted anything about me. If I hadn’t started figuring it out for myself I would still be oblivious.
I think the spectrum is best visualised as a sphere – not my idea but can’t remember where I saw it first. Definitely something 3D. The autism cloud. ☁️ Or perhaps autism galaxy. 🌌 With each of us a star ⭐️

True that! 😊. I can almost relate! My mom informally homeschooled me from ages 2-4 or 5, and then the state (a different state than the one I’m in) wouldn’t let her homeschool, and there weren’t any private schools in the area. But she really really wanted to homeschool me, and I wish she could have! How was it for you? Did it work out well? Did you like it? 😊❤️

You and my son would get along. 🙂 . He’s not a “typically” Asperger’s kid. In fact, when he was diagnosed in Grade 1, the psychiatrist said that he is very extroverted for an aspie, and encouraged it. It has done more good than harm along the way, but I know that he is all the more stronger for it. BTW, my post tomorrow is related to Asperger’s portrayals and my view on a play and a new ABC show. I’d love to hear your opinion whenever you have the chance.

Sure thing! 😊👍🏼. I’m looking forward to it! ❤️. Omg I would love to hang out with y’all – I’m an introverted Aspie until I am around people (usually just a few at a time lol) whom I’m comfortable with – then I can be pretty extroverted, which in increases according to the level of comfort/familiarity I feel with the people 😊💜. I can’t wait to read your post! 🤗💞

Unconventional is a perfect word-one I certainly identify with, even within the spectrum. Of course, as you may recall, I am still out here in self-diagnosed land- mostly due to financial constraints these days, although I have grown fairly comfortable with my own instinct on the matter… until I encounter the ones who dismiss my legitimacy, that is. Sigh. But, blessedly, I am encountering less and less of such people. (Of course, some of that may be due to my increasing choosiness who I disclose to and associate with, but, it’s a nice side effect. 🙂 ) I also do not possess some of the stereotypical traits-no math genius or tech talent here! I had major sensory issues with food growing up( many remain to this day) but not an eating disorder. My suicide attempts and PTSD were as much an issue of having been abused as anything else. ( meaning autism or no, I reckon the results of abuse survival would’ve been similar, though I am sure my struggles were amplified by my unknown neurology) Never had an interest in dinosaurs. Always loved the idea of train travel, but that is as far as that interest went. BUT, I had the intensity of interest often associated with autism in my own set of things-classic film and television, art, vintage items, and, of course, language. 🙂 ❤ I think limiting criteria to such a narrow list discounts the wideness of the spectrum and does a grave disservice to many of us who identify with the meat of autism descriptions but perhaps not every piece of the extraneous stuff. I personally love the uniqueness found in each individual as much as I love clicking on the similarities. Makes life that much more interesting. ❤😀

Amen, luv!! 👏🏼👏🏼👏🏼😘❤️. Wow, you are one Epic person 😁👊🏼🌺. I love this whole comment! I don’t love the fact that you have suffered so much. But I love who you’ve become in spite of it. I love your “flavor” (the specific details) of your autism. To me, you’re a part of the community, “official” diagnosis or not. That has never mattered to me, as you probably know 😉. What matters to me is What Is, and please never let anyone tell you differently that somehow you’re not for real just because you haven’t yet gotten a piece of paper from a gatekeeper 😊. (I know that’s not where you were going with that, but I wanted to state it for the record) 😁. You always amaze me in wonderful ways 😘💖🌟💖

I’ve been trying to find information regarding autism and abuse victims, and how they relate, how it affects us differently etc. I think part of my hesitation towards being examined for a diagnosis is 1. dragging all the details up, and 2. having them say that my suspicions of ASD are actually just a result of that trauma. I do wonder myself, but suspect not, but that its more of a series of layers with the Aspergers being one of those layers.

Understand every bit of that completely. I would be interested to know more about how abuse affects autistic victims, too. I have done several rounds of therapy over the years. It is never easy to revisit the details. Looking back, I was amazed that my last therapist never stopped to consider autism as one of my layers, considering that, by then I had two children on the spectrum and described numerous struggles

Oops. Another moment of my hand slipping to the send button prematurely. lol. Continuing: described numerous struggles that paralleled my children’s. But, then, her training was not necessarily in that area, I suppose.

Thank you so much for adding your voice 🌺 I think I do know what you mean, my friend, and I promise I didn’t mean it that way (if I’m understanding your words correctly, of course) 😘❤️. Please allow me to clarify that ultimately any and all of us are our own “judges”, but I would venture to say that any and all of us are doing it right ❤️. At least, none of us are doing it wrong. I don’t think there is a wrong way to be; only what’s right for that person, you know? 😊 At the very least, I definitely would like to clarify that I’m surely not passing any judgment or even opinion on anyone else’s situation at all 💜💙

The Matrix also speaks of “residual self-image,” how you saw yourself in the Matrix versus how you were in the real world. I’m still less than six months from my diagnosis, having “passed” for “normal” most of my adult life, and a bunch of that time has gone into integrating this new picture of myself, with its advantages and disadvantages, into who I’ve been up until now. You suspected and researched in the run-up to your diagnosis; I suspected and sought diagnosis, but was assured I wasn’t and went on my merry way, so I’m finding it to be kind of a trip.

Oh wow! So does that mean you were denied a diagnosis? (In my experience thus far, those who genuinely suspect they might be on the spectrum usually are. 😊😊). You raise a really interesting element! Thank you for the food for thought 😍. What you’re going through must be an interesting path of its own! 💙💙

I identify this, I was diagnosed when I was 9 yrs old and I was feed by the people who looked after me that I was being dramatic and got no support, I always felt different though because I was not a certain mould as it were I feel isolated and very alone. So, it is really hard to accept yourself sometimes. X

I can relate to this and the human need to belong to certain groups they identify with and relate to. However, I need to remind myself that if you’ve met one person with autism, you’ve met one person with autism. I have less desire nowadays to identify myself with a group, NT or autistic or “us” or “them”. A free and independent soul is who I want to me, I don’t need to belong to “us” or “them’, I just want to be me. 😊

This, *so hard*!! Thunderous applause! And cheering and stuff. Totally agreed, on all points. I went through more of a phase earlier on, circa summer and fall of last year. Only to find out several months after that that not only is it draining to identify too much with a group, but it can also be….impossible. Because about the only thing we all have in common is that we’re all different. 🙂 ❤

I have sometimes though, and said, that I am not even normal for an autistic person … I am very extroverted, I like meeting people and socialising, I talk way to much, and I don’t mind crowds and noisy, busy places and don’t usually have any major problems with sensory sensitivity (probably one of the reasons I spent about 10 years thinking I just had some Aspie traits, or if I had it I had grown out of it, and it didn’t matter) … but … when I kind of fell apart, and then learnt a lot more about Aspergers/autism, I now realise that in some other ways I am very autistic … I guess the huge differences between us in some aspects is probably due to the specific combination between our particular personality/etc, interacting with our autistic neurology?

Yes … But now I am starting to wonder if I am Autistic, or who/what I actually am – my diagnosis last year was not an official one – the person who diagnosed me is an expert in ASD but only registered as a GP … and I was told I would need a definitive diagnosis from a psychologist or psychiatrist to be eligible for some things, so I agreed to go see a psychologist who specialises in ASD … and she did all the testing, and came to the conclusion that according to her tests I don’t quite score high enough to meet the criteria for her to give me the diagnosis … her conclusion was that I am not an Aspie but she doesn’t know what I am … she suggested ADHD (because I talk too much, especially when I am stressed) … but I don’t fit in that box either … she told me I am very hard to diagnose, because I don’t know myself (er … A: that was what she was supposed to be helping me with, and B: I do know what I do/don’t do and what I am like … But she didn’t seem to be able to ask the right questions in a way I understood what she was asking, or understand my answers – in fact I am fairly sure there was almost no actual effective communication between us – which I found very odd when she has spent many years working with Aspies/Autistic people!) and she said I could just have anxiety that causes me to talk a lot which caused all my other problems (which make no sense and doesn’t explain most of the Aspie traits that I do have) and she declared that whatever I might have is not in her area of expertise so she can’t help me … which saved me having to tell her that I didn’t want to keep seeing her – lol
So … one identity crisis later, and some far more helpful “therapy” from a phone call to Mum – I have realised that no matter what label I do or don’t have from whom … I quite possibly am actually Autistic (just not on the same ends of the bell curves as most, and/or have coped too well/learnt to act too normal to be diagnosed) or if I am not actually a real Aspie I am almost, or something very much like, one … maybe “incomplete Autism” IS actually a thing, and I am it? lol … but the most annoying thing is that I saw that psychologist for help … and got the opposite … It wasn’t just the official label I was hoping/expecting to get – I was also hoping, as part of the process of diagnosis, and maybe more sessions later, to find out a lot more about myself – what things/aspects/areas I struggle with and why, and what I was coping well with and what I wasn’t – so I could be better equipped to work with my strengths and overcome (or work around) my weaknesses …
And … what I have since also realised, with no help from her – I have worked it out myself (with a bit of help from a few conversations with Mum/someone else helping me with things at work) – that what I am still strulggling with at the moment is not only the Aspergers, or almost Aspergers or whatever … I am fairly sure I still also have at least part of the other mental health problem I had, one that resulted in me becoming too stressed to actually do my job, and them trying to fix that with underperformance action – which resulted in me having an even bigger problem and almost 6 months off work and led to me getting the not quite official Aspie diagnosis early last year (I was also diagnosed with Adjustment disorder … in other words a label for legal purposes, that means I was stressed to the eyeballs from the way I was treated at work, and had no support when I was having problems at work, and was treated even worse when they tried to “fix” their problem by breaking me … and I am still stressed because my compensation claim was denied (on some legal loophole they can use) and I still have not had the help I needed to fully come to terms with what happened or to figure myself out, or fully resolved the work situation – they (government department I work for) have moved me, and I am actually enjoying working where I now am, but it is not a permanent position … I still have to find somewhere to transfer to … sigh … )
So … My new identity/self understanding is still a work in progress … and I probably should be blogging about stuff, rather than sitting here, at 5:30am, writing comments in old blog posts – lol … but I kind of got busy, and I mnever seem to get around to posting anything … there never seem to be enough hours in the day … sigh …
(I do write stuff about what happens, how I feel, stuff I think about … just have not organised any of it into any kind of thing that makes sense, or that anyone else would want to read … Maybe I should edit this comment and make it into a blog post – lol
But not now … I really should go to bed before the sun comes up!
Oops?